Recipient organisationNIHR Bristol Clinical Research Facility
NIHR supportRecorded as supported by this research centre
PeriodFeb 2025 — Mar 2029
In plain English
AI plain-English summary
Around 1 in 700 babies in the UK are born with a cleft lip and/or palate, yet no one knows whether their long-term outcomes differ depending on where they live, their sex, or their ethnicity. This programme of research aims to find out. The problem is that young adults with cleft conditions are discharged from routine NHS care between the ages of 15 and 25, but there is no systematic data on how well they fare afterwards. Without that knowledge, clinicians and patients cannot tell whether some groups are systematically falling behind—for example, in appearance, speech, dental health, or quality of life. If this research succeeds, it will produce the first national picture of variation in outcomes after routine care ends. The team will then work with young adults and clinicians to develop an intervention that ensures everyone born with a cleft has the same opportunity to do well. This could lead to more equitable follow-up care, tailored support for those who need it most, and a clearer standard for what a "good outcome" looks like at discharge. The project is directly practical: it aims to change how the NHS monitors and supports this lifelong condition.
View original technical description
Cleft lip and/or palate is a lifelong condition affecting 1 in 700 babies. Individuals born with cleft lip and/or palate in the UK have multiple operations and support from specialist dentists, speech and language therapists, psychologists and nurses until they are discharged from routine care when they aged between 15- and 25-years-old. Currently we don’t know what variation there is in outcomes (i.e. how well individuals do in response to different NHS interventions) for this population after they are discharged from routine care. This programme of research will determine whether outcomes vary depending on things like where they live, their biological sex or gender, or their ethnicity. Once we understand how outcomes vary, and the scale and type of variation, we will work with young adults born with cleft lip and/or palate and specialist clinicians to develop ways to ensure that everyone born with a cleft has the same opportunity to do well. This programme has four research projects, of which this is the first: Research clinics with regional cleft centres across the UK to measure outcomes that are relevant for people born with a cleft such as appearance, speech, dental, well-being and quality of life, and determine how these vary for different groups based on characteristics such as ethnicity, socio-economic status, sex and gender and geographical location. Interviews with young adults born with cleft lip and/or palate to understand how they describe their outcomes and any needs they have identified since being discharged. A ‘consensus-building’ exercise to determine what should be considered a good outcome at the point of discharge from routine care. Development of an intervention to address the variation in outcomes. We have worked with the patient population to develop these research plans and we will continue to work with them to deliver the research and report the findings.
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